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Marry: "It feels like a very strong flu. You have pain throughout your body and neurological pain as well. Thanks to medication, I have largely been able to keep these symptoms under control.

Marry became ill with ME in her adolescence. "When I went to the internist. He said "your immune system is upset."

That was thirty years ago.

They did not recognize the symptoms of ME when I was an adolescent, and now thirty years later, they still don’t.

''Recognition of the disease by medical professionals is hard to find and badly needed. "

Marry emphasized, "Symptoms such as severe depletion of energy after a small exertion, recurrent infections, swollen lymph nodes, muscle and joint problems, heart and bowel problems - everything ends up being diagnosed as chronic fatigue.

With my complaints I tried everything I could to find assistance - in the AMC, Erasmus and several doctors elsewhere in the Netherlands.

All my symptoms are recognized, but nothing is done in the Netherlands.

The diagnosis was always 'chronic fatigue' and then I am only offered a psychiatrist and a rehabilitation option.

''Marry is not a woman to give up and just sit waiting. So focused they began an initiative for parents with ME and ME children, she is a board member and volunteer of ESME (European Society for Me) whom together with two fellow volunteers translated the Canadian International Consensus Criteria for ME.

Since October 2011, the new International ME Consensus Criteria's (ICC) came into force. These criteria were prepared by 26 renowned physicians and researchers in the world who are working daily with ME patients.

Even custody of a Child …

"I fight for the parents of children with ME because parents nowadays are deemed as unfit if they have a child with ME and refuse to put their child into psychiatric care!

This disease does not belong to Psychiatry.

If you have diabetes you do not go to a psychiatrist! "

Molendijk marry: "ME is a crippling disease of attrition and not fatigue."